A Few Noteworthy Things…

I hadn’t planned on writing loads of blogs during Foggy’s home stretch but a few things have happened that should be talked about.

Yesterday, for want of a better word, I was ‘head-hunted’ due to my social media marketing business to ‘host’ a Twitter hour slot for the foreseeable future. I had a phone conversation with the founder of this successful business related Twitter hour (38k followers) and felt extremely happy to be asked. She said she weekly has hundreds of requests from social media marketers to do hosting but she only uses people who have demonstrated creativity, talent and experience. It would have given me much needed exposure for my business. Whoop….what a fantastic compliment. I would have snapped her hand off….if I didn’t have M.E.

This Twitter hour is at 1pm, JUST when my M.E usually starts to hit, regardless of what activity I have done during the morning. I find that social media is draining when I schedule tweets or send them out spontaneously during the day. One hour of absolutely concentration, creating content, topics, and responding immediately to interaction…..ugh. It’s a busy twitter hour, I know because I interact with it myself. It’s got a very good reputation for having great content and being good fun.

Part of the reason I turned the opportunity down is guilt. I would feel dreadful if I couldn’t keep up with the time commitment due to my M.E or if I struggled cognitively halfway through an hour. Due to the nature of the beast, it is a solo venture. Just me, sitting at my desk, ‘talking’ to lots and lots of businesses online. I wouldn’t have a back-up plan. She explained it as like being a DJ, I would simply be filling in a slot of time.

I am disappointed but know it is well outside of my energy possibilities. Such a shame, I know I would have loved it and been blooming good at it! You can’t be witty and fun if you are cognitively comatose. I am just going to take the opportunity offer as a huge compliment of my social media ability, it’s great to be recognised professionally.

The second thing happened this morning. I have just watched a segment on Sky Sunrise about how patients with chronic illnesses deal with sick days with employers. Crohns and Colitis UK have done

some research, that’s why they were on the breakfast news show. This piece of research highlights that instead of being honest about why we need to take time off sick, patients (in this case Crohns and Colitis but the same can be applied to all chronic illness…M.E included) say they have a common complaint instead of naming the chronic illness as the reason for the time off. So, for example, they might say they have a tummy bug and so need to take one day off when in actual fact it is a flare of their chronic illness. Everybody knows what a tummy upset is like, no need for graphic explanations or in-depth conversations about back to work schedules etc.

This resonated with me personally because, as a mild sufferer who was able to work full time, I used to do this. I used to proclaim that I had never had a day off due to M.E. I lied. I lied for 2 reasons.
1. When I was in employment I didn’t want to give my employers an excuse to call me unfit for work.
2. After I left, I was job hunting and I didn’t want to put potential employers off.

The sickness level in my department was high across the department so I didn’t stand out as the ‘sick’ person. I wasn’t anywhere near the limits of acceptable sickness absence. However, I did take quite a lot of time off with migraines, headaches, feeling nauseous, very low blood pressure, feeling faint -ringing bells with anyone?!

Wouldn’t it have been lovely if my employer understood my illness? Wouldn’t it have been great to not have to lie about what was wrong?